How are people with liver mets doing?
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Shetland, Liwi, you have certainly had your plates full lately with the family medical issues. Very tough and can be scary. Shetland, it is good to hear from you. I am still in disbelief over Artist. Time passing does not take away the shock and confusion over the whole thing.
Kaayborg, beautiful photo - both you and the backdrop! Glad you took the trip.
Kaylynne, sorry to hear the disappointing news from the IR. What a punch in the gut. My first IR said no, it was too dangerous, as I am too heavily pretreated and my liver would fail. The second IR, who is much more of an expert in Y90 and has extensive experience with Y90 specifically in breast cancer, told me I was an "ideal candidate". There is an element of science in this and an element of art and everyone interprets the art differently, for better or for worse. I hope you make some progress with the trial route.
Z, I have also heard of others who have had some sort of flare that resulted in abdominal swelling/bloating upon starting a new chemo. You really went through extreme measures to ensure those cancer beasts were targeted with laser precision so it would not be surprising if everything is going haywire within those cells right now or if some massive die-off is underway. I used to "hate" the idea of chemos but have grown to appreciate them for how powerful they can be.
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Kaayborg, what a wonderful picture. I hope the relaxing memories stay close and you can "go back" there anytime in your mind.
Kiwi, it sounds like you will be having a change of lifestyle for a little bit. Scary moments for sure. Glad the hubby is home and will be ok.
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Kaayborg, I love the picture. That sand looks so soft and the water is so clear and inviting. I am glad you had a good trip. I am sorry you are worried about progression. I will be thinking of you on Tuesday as you meet with your MO.
Shetland, I hope that your DH is doing better. It is difficult being the care-giver, don't you think? I worry so much more when my DH is the patient than when it is me. I have reached an odd sense of calm about my MBC, but I have internal (and sometimes external) meltdowns when my DH is sick. Make sure you don't neglect yourself while you are going through all this. It is easy to neglect your own needs.
Liwi, What a frightening experience you had. I am happy to hear that your husband is recovering and did not require surgery, but finding him on the floor and unresponsive must have been awful No, awful isn't strong enough. There is no word for it. I do hope that he follows doctor's orders and takes it easy while he recovers fully. My advice to Shetland goes for you, too. Take time to care for yourself.
Hugs and prayers from, Lynne
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kaayborg! You look marvelous darling! I'm sending love and light and positive vibes for your Tuesday appointment. I hope you have a relaxing weekend with your family.
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Liwi - What a traumatic thing to go through with everything you have on your plate. Your post is remarkably sensible and clear given what these past few days must have been. You are a great caretaker and much needed by your family.
Artist - Thinking of you.
JFL - You have been very articulate regarding your chemo experience. Your perspective and experience have been key in getting me to look at chemo positively. Thank you for comments.
Shetland - Hope the weekend has been restful and full of good times with your family.
I hope everyone's weekend is cancer free. Everything can wait until Monday.
>Z<
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K -lovely pic, so glad you had a vacay. Please keep us posted re: your Tuesday appt. Z - when do you get your MRI results? How do your CA 15-3 and 27.29 numbers look? Rooting for A-train to do its job super fast! I fly to NYC on Tuesday. Excited except the weather is a bust now (rain and more rain). Will eat good Italian at Mario Batali's place (he won't be there to pinch anymore ladies). Looking forward to restarting xeloda since it can penetrate BBB, it may help knock out my still present jaw met along with micro liver mets. Sorry to hear about your husband Liwi. Ditto Shetland - you are so lovely and helpful, but have a lot on your family plate.
(()) Claire
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Hi, Claire! I hope you have a good trip to NYC. And that the weather forecast is wrong. Kaayborg, lovely photo, both the lady and the scenery. I'm so glad you two got to take that vacation. Kaylynne, trying to come up with the next plan is so stressful. I hope you and your docs can soon decide on a good one and that you get great results. Zarovka, I love your idea of a cancer-free weekend and letting it wait until Monday. May I say that I think your Abraxane decision is a good one. As freaky as it is to go to chemo, I know you'll handle it with your usual aplomb.
Liwi, I think I know exactly what you mean. I've just spent weeks hardly thinking about my own health as I have been so focused on what is going on with my husband. I wish your husband a speedy recovery. Thank you 50sgirl, always so kind and wise. Yes, my situation is sort of status quo, but trying to figure out what was going on with DH and get him some help has taken a lot of time and energy. I've had some of those days when I was so emotionally exhausted I just ate and watched videos most of the day. DH is doing better on the med, and we will be learning more in the coming weeks. Things are actually looking up compared to how they have been with no diagnosis. My goodness, when we go to the cancer center, his obvious struggles to function would make anyone think he is the patient, not me.
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Hello Ladies,
I’m very scared at the moment I have a stomach the same six as a six months pregnant woman and I can’t stand it anymore. Been pretty down lately and Z I know I need to update my treatment and it’s on my ever growing list of things I need to get to.
After finishing Xeloda they started me on Ibrance and exemestane. Prior to that my stomach started to swell. I fear my liver is shutting down. Anyone experience anything like this.
Wendy
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Wendy K-I am sorry to hear about your swelling. I don't think it is an indication your liver is shutting down. You may have ascites? I haven't experienced the swelling yet. Many ladies can guide you on this.
Ladies-I have liver mets, and of course have not heard my cat scan results yet, so I am nervous. I do have one question-I have quite the appetite and no issues with eating. Is this an indicator of anything positive about mets? I am really digging here-and can someone tell me what liver pain feels like? Thank you.
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LisaJo, Hugs and prayers for good CT results! I've had liver mets for about a year and to date, haven't had any trouble with appetite. I'm just starting to have pain.
Feels sort of sore under my ribcage. Which brings me to my question... what do people do for liver pain? My bloodwork has mostly been unremarkable though the last appt my liver enzymes were very slightly elevated. Hard not to worry..... Scans about 2 months ago showed stable dz.
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Wendy, I too look l like I'm 6 months pregnant and hate it, but Xeloda plays a big part in that. When do you get scans? Mine are in May. Interested to hear from those who have ascites.....symptoms??
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All - I am still on a fast until tomorrow morning, I'll stop 24 hours post infusion. Between that and figuring out taxes, posting is limited. I also focused on working out today. From about 9:30 to 3:30 I stayed active. A little more in the evening. 20,000 steps. 3 hours of activity per my fitbit and the yoga doesn't register. I can feel the pulse in my liver area with certain yoga poses and that feels like the right thing. The idea is to get blood flow and drug to tumor.
My kids have mastered cold cap management. Older daughter skipped morning classes, younger daughter took over in the afternoon. My face and hands seem a red but otherwise no weird symptoms. And that could be liver, not chemo. No major nosebleed here. I have a small one periodically which pre-dated chemo and I think has to do with liver impairment.
Ended the day with a fun game of risk with my kids. DH in Geneva, but somehow the kids made it all work.
My MRI is a mess with 60%+ liver involvement and ascites. But I am not sure what the bloating/tight abdomen is because the intensity increases and decreases wildly. Right now it is very mild. Blood work is bad but allowed chemo to proceed. Chemo went well. Doctor agreed to full dose. I think I have a shot at getting him to agree to give me abraxane 4 out of 4 weeks instead of just 3 out of 4 weeks. I'll take it if I can get it. I got a lot of mets.
Reading, not posting much, but my thoughts are with Wendy, lisajo, rpoole and, of course, absolutely everyone hanging out here. Thanks for the updates and comments. Everything makes me think, gives me perspective and makes me better at dealing with this. Wish I could be more helpful today, but I am just getting through my chemo infusion as best I can.
>Z<
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>z< you have always been helpful to everyone! Rest and heal! You can just read for awhile. Sending healing vibes your way.
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Zarovka, rest, read and if needed, take a break from BCO.
You have the knowledge to get you through this systemic chemo. I also had ascites when diagnosed with widespread liver mets, not large enough to be drained, but visible on CT scan. It cleared up with chemo.
Now go kill some liver mets.
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P.S. Apparently, many years ago there was another Sandibeach. That isn't me and too late to change moniker.
Sandibeach57
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I'm just glad to hear from you, Z. It makes me sad to hear your MRI results but you knew it wasnt good, that's why youre doing A. Seems there have been others here who have gotten better with a similar messed up liver. Glad your girls are there for you, we are to. Where is the pain that from your liver? Do they plan to drain the ascitis? I'm glad you're getting A every week. Death to liver mets.💞
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Z- sorry to hear about MRI with 60% liver mets, but you are strong and fasting/exercise should help. Let A-train do it's job to knock out liver mets. We are all rooting for you! I'll keep ladies posted on my job hunt. My wig looks good! I'm looking forward to going back on xeloda Saturday. Just don't want anymore bone or liver involvement. Spoken for the choir of us. Grannax -good to hear from you. Lisa- a good appetite is a good thing - wish I had more of one. :0
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Womp womp... Progression of liver mets.
seeing my onc on Friday to discuss options. Weirdly I feel better than I did yesterday when I wasn't sure whether there was progression... It does bum me out, though... I feel like I'm going through treatment options.
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Z - thinking about you, and wishing A does it's job! You're still the fiercest warrior I know—there's no doubt your doing everything possible to get this under control.
Sorry to hear about your progression, Laurie. May your next treatment be the one that gives you a nice long run
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Z— I’m thinking about you and wishing you well. May your intelligent planning and determination result in a successful and lasting treatment against your liver mets. You got this, and it’s okay to rest when needed. Let the medication do it’s job.
If the bloating comes and goes...it could be affected by improper digestion and food intolerances. Pay attention, when you start eating again, if it’s associated with the consumption of a particular food you like.
That’s usually what happens with me, but of course we are all different.
I’m wheat intolerant, so when I eat bread consistently I immediately get bloated as if pregnant.....but bread is unfortunately one of my favorite foodstuff...
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hey everyone. Let me start by saying F@ck Cancer! My CT scan from Friday shows that I have significant progression with innumerable lesions in my liver, the largest measuring 5.7 x 7.8. So Xeloda did nothing. On top of that, I have bone mets in my right ribs, right scapula, right hip, upper and lower spine and left ribs. No wonder I hurt like hell. Why didn’t the CT scan detect this in February and again mid March when i went to the ER? Are the machines outdated, the radiologist inadequate?? Im still doing the trial but I’m losing hope
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hey Kaylynne I'm so saddened to hear about your progression and share your frustrations. Let me second your sentiment by repeating:F@ck Cancer!
It seems at times as if there's no reliable science whatsoever behind the test and medications we receive...
On the other hand, once they switch medications the mets recently discovered could as easily disappear.
Many women here have had that type of experience, keep your hopes alive, you might greatly benefit from the next treatment and all this stress might be over soon...hugs!
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Kaylynne, so sorry to hear this. What a blow! It is certainly time you catch a break. Hoping and praying this trial does wonders.
Wendy, I'm looking 8 months prego, I swear for the past 8 months, which means this liver baby is due to go. For me it is my petite frame and all liver inflammation. No ascites to be found...we've tried. I am tired of it to be sure but morphine has made the pressure manageable.
Currently in the hospital here with the horrible discovery of brain mets...my worst fear. Starting full brain radiation tomorrow. Bluck!
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kaayborg, I’m so sorry to hear about the brain mets...I hope the radiations tomorrow starts to resolve them
You are in my thoughts and prayers....
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Kaylynne, I am sorry to hear about the scan results. So disappointing and upsetting. Nothing about cancer makes any sense. Nothing. Thinking of you and praying for miracles with the clinical trial.
Kaayborg, you are a strong person to handle the belly swelling so well. Must be hard to deal with that for 8 months on your petite frame. I sad/mad to hear about your brain mets. Did you have any symptoms leading up to the diagnosis? Sounds like you are jumping right on this one with WBR. Now, time for it to work wonders!
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Kayborg and Kaylynne, just want you two to know that I am here in your corner and pained to hear of your recent developments. I hate frickin' cancer so much. Sending gentle hugs-MJH
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Kaaborg, that just sucks big time I’m so sorry to hear that. I look often at Lita’s page and with twenty bone mets she chugs along she is a big inspiration for me. I’m hoping that the WBR takes care of it. Can they operate a good friend of mine who is on Xeloda right now had a brain met and they cut it out pretty fast and she is recovering nicely. I guess it always depends where it is.
Z this news from you also isn’t great right now. But if I know anyone who can get through chemo with great success it would be you. So weird when we find the drug that works it can be knocked back to nothing. Spoke yesterday with a paddling friend who has had liver mets and bone mets for 18years. She is still out there paddling , she said she just reached a certain age and it was like the liver mets lost there power and started dying. I wish that for all of us. She is 58 now so maybe a slower metabolism helps idk I’m reaching. If that is the case can we fool our bodies with meditation etc to slow the hell down . Every time I hear progression it does a number on my mind, how does this affect us negatively. You are doing everything you can and it’s not easy. I tried to fast once for chemo and nearly ate the arm off my attending nurse poor thing🤤.
Lindalou your post helped me so much I cannot tell you. I was in so much pain and was ready to jump off a bridge. I don’t want anyone else to go through this but knowing I wasn’t alone really helped me❤️
So was at the hospital for seven hours of draining. They took out eight and a half litres , that’s the fastest weight I ever lost. So now we watch if it comes back and how fast. I can see my boots again yeah. I asked if they would use the fluid to see where it was coming from ( in Canada you always have to ask) since I asked they will examin it.
Kaylynne Xeloda only worked for me for five months everyone else I know got a year or so frustrating as hell. Nevermind the sore hands and feet, why can’t a side effect be increased brain function, or faster hair growth. Frustrating to go through it and get nothing out of it. Have you had any testing done on what would work for you and what wouldn’t. This stuff is so hard on the rest of our bodies you’d think that would be a priority. I always tell myself the next one will work , the next one. So here we battle on I don’t think there are truer warriors than woman who battle this disease. Big hug🤗
Wendy
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So sorry to hear this, Kaylynne. I'm another one who Xeloda failed. Frustrating, since it works well for some. I'll be keeping you in my prayers as you move forward. Some days, this is a very hard road.
I too am headed into a trial (I hope). Mostly optimistic, but can't help but realize that the list of possible treatments is getting awfully short for me. I'm not triple negative, but my her2-positive cancer has not responded well to the things that it's supposed to, so treatment is proving challenging.
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Miaomix - The food intolerance thing is an important point. Thanks. These treatment and the cancer change the way we respond to food and it's something I need to consider.
Kaylynne - fingers crossed for the trial. Glad there is a plan. I can feel how drained you are and I totally get it. Stay in it and stay with us.
Kayborg - What freaking pile of crap. Grateful the treatment is immediate. We want to know everything ...
Wendy - you are in my thoughts. Your story lifts my spirits. Congrats on losing 8 and HALF frickin liters!!! And then remembering to advocate for yourself. When I am in the hospital I have to check the wristband to recall my name. You did AWESOME. I definitely want to know what you learn. I know nothing about ascites. I would not have known to ask that question ...
Grannax - The way the bloating comes and goes, I am not sure it is ascites. It's also not that bad, so I am not even asking about draining. One less day in medical care is one less day in hell. Not enjoying hospitals much.
Lalady you awesome chick, get NY and enjoy yourself and nail that interview.
And the support ... I could NOT deal with this without you guys. Thank you all.
Broke my fast with avocado on spelt crackers and raspberries this morning. Took a 5 hour break from eating and followed up with whole grain pasta and zucchini. That was so good, I immediately went for another plate. Not a good idea. Spent an hour lying over a bolster while my stomach pondered what to do with this situation.
Re-feeding is a thing I still need to master but overall doing well. My gall bladder is not all pleased to be woken up from a peaceful 3 day nap but my liver is less painful. Good sign. Yoga helping on all fronts.
I don't know who I missed on this fast moving thread. I am reading and I am feeling what you are going through. I care about each and every person and every thing you are going through whether you post it or not. I am rooting for you.
Hugs for EVERYONE posting, lurking. In your corner.
>Z<
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kaayborg I’m just broken with your news! Seriously you had enough to deal with! You must be so terrified and frustrated with it all! One foot in front of the other, one day at a time and on we go in this journey. Life is so confusing but so wonderful. Wishing you all the best and waiting to hear how it goes...I care!
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